The numbers don’t lie - neuroblastoma is a deadly form of childhood cancer. The grueling upfront treatment process can easily take a year and involve multiple treatment modalities. The physical and emotional toll on a patient and his/her family is severe, only mitigated by the fact that neuroblastoma usually responds quickly to treatment. Until only a few years ago, if a patient was declared NED (no evidence of disease – more on that in a minute) at the end of the treatment plan, there was nothing further to be done. Except for scans. New sets of scans would be required every three months for a number of years.

There is a reason that neuroblastoma patients found to be clear of cancer are never referred to as “cured.” No, for them NED is as good as it gets. And why must these kids undergo grueling diagnostic imaging every quarter?

Because neuroblastoma is relentless. When it comes back, which it does for 34% of kids within the first two years of achieving NED, it is often with a vengeance. Case in point: within four years, nearly 30% of those children will be dead.

So why does neuroblastoma come back? One theory is that it never really left in the first place. In other words, malignant cells are able to evade current diagnostic imaging technology.

Even ten years ago relapsed neuroblastoma was considered terminal. There was simply nothing else to be done. The disease had come back and if it didn’t respond wholly to chemotherapy the first time, it wouldn’t a second time (this is what parents were commonly told along with advice to “Make the most of the time you have together.”)

But what if there was a way to prevent relapse from happening? Instead of waiting for it, why not get out ahead of it?

And that’s why last week’s news on DFMO is earth-shattering. The study results firmly support the notion that a maintenance therapy – think low dose, easily tolerated, few side effects – provides additional defense against relapse.

So are you ready for the numbers? Are you ready to feel positive and hopeful and proud and ready to help us get this treatment to every child?

For kids that took DFMO after getting into a first remission, 84% stayed in remission after two years and 97% were still alive after two years as well. And at the four-year mark, 83% are still in remission and 96% are still alive.

The results from a second group of 39 participants that entered the trial after a relapse or with refractory (disease that is present but stable) neuroblastoma also had incredible results. Remember, not long ago these kids would have been deemed terminal. In this group, 56% of kids where still in remission after one year. Without DFMO thisnumber would be more like 20%. And in terms of overall survival, with DFMO 95% of kids were alive one year later; without DFMO, less than 60% would be alive. At the four-year mark, 44% of kids were still in remission (compared to 6% otherwise) and 62% were still alive (compared to 20% otherwise).

One last stat to share. In the world of neuroblastoma, a cancer that is pathologically found to be “amplified” with something called MYCN historically have a harder fight since amplified cells grow fast and spread with ease.In this group, 71% of kids were still in remission after one year. Without DFMO this number would be just barely above 10%. Overall survival rate at the one year mark was 86% thanks to DFMO; without the therapy, survival at 12 months out would only be 30%.

Finally consider the amplified kids at four-years: 0% would be alive without DFMO. With DFMO? Nearly 70%.

If you would like to learn more, the link to the published study is here. There's also a deeper dive blog post we wrote. We will be diving into what this all means in greater detail over the next week or two. Thank you all for believing in us and for your blood, sweat, and tears to help us get to this amazing moment in Beat Nb history. Stay with us as there is still work to be done to. Together we WILL Beat Nb.

About the Author

Jen Crowley

Jen Crowley and her husband John live in Rochester, NY where they are raising three children, Padraig (11), Noel (8), and Eloise (6). The Crowley’s first child Cian died of neuroblastoma in 2006; brother Padraig was diagnosed with stage IV neuroblastoma in 2014. Jen is a healthcare PR/mar com professional that is delighted to apply her skills and amazingly awful life experiences to help end this disease.

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